I first met Tanis and her parents, Steve and Kathleen, at our first meeting with our local Down syndrome group, Down Up North, when Sam was just a few months old. I often saw her after that when she would attend an older ballet class at the same time as Ella. She is now nine years old, and today her mom answers a few questions about her beautiful girl.
How did you find out Tanis had Down syndrome?
About one hour after she was born, the Family Practice doctor came to my hospital room. He told me he had some concerns and would be asking a specialist to examine Tanis and let me know. The hardest part was my husband had gone home to get our older kids and I had to be the one to tell him when he returned.
What were some of the emotions you had when you got the news?
Nervousness and worry that I would not be up to the job. (all very baseless worries as it turns out!)
How did siblings respond to the news of Down syndrome?
They showered her with kisses and love. They are very protective and love teaching her new things.
What are a few of Tanis’s favorite things to do?
She loves her friends at school. Even when she is home, she “pretends” they are with her doing things at home. She loves anything related to Elsa and Frozen, Tinkerbell and now Nemo. She is a very physical kid and loves to help me outside. She does not mind getting dirty, so digging in the garden is fun. She is also the most artistic of our three kids and loves to draw.
What is something you want everyone to know about your daughter?
She knows more people than we do. We are constantly whispering to one another when we go out, “who was that?” after someone says “hi” to Tanis.
What is something that has surprised you about having a child with Down syndrome?
Tanis develops more slowly and all those milestones are much sweeter! It is great fun watching her develop and learn. Sometimes with the other kids, it went so fast.
What is one of the most challenging parts of having a child with Down syndrome?
Tanis is slow! There is no “fast” button – unless she runs away from me at Target! If I am in a hurry to do something, she takes more time to process information and I have to cool my jets.
with a friend
If you knew someone who just had a baby born with Down syndrome, what would you say?
Congratulations! You will never have another lonely or dull day in your life!
Meet Caleb! This darling boy is 20 months-old. Today his mom, Kate, answers a few questions about a few of her experiences since her son was born. You can find Kate on Facebook and as @MKLMC_H on Instagram. She is currently a part of a beautiful project right now featuring 31 beautiful people who have Down syndrome. Check out her Instagram feed for more info!
When did you find out Caleb had Down syndrome? We found out at birth, within about 15 minutes the Dr. told us and it was confirmed 5 days later.
What were some of the emotions you had when you got the news?
Sadness because I felt the future might not be as promising as you hope for a child.
What is Caleb’s favorite food? What does he like to do?
He loves pizza and playing with balls and bubbles.
What have been good resources for you to learn more about Down syndrome?
Social Media and local connections
What is something that has surprised you about Down syndrome or knowing someone with Down syndrome?
How much Caleb can actually achieve and how our lives are MUCH more joyful with Caleb in it!
If someone you knew was told their baby would be born with Down syndrome, what would you tell them?
You are one of the “lucky few” and it will be more than alright! Use the resources available to you. Early intervention really does work.
Caleb’s red shirt is from Group Hug Apparel, a company created by Andrew, an amazing young man who happens to have Down syndrome.
Click below to read all the stories from Down Syndrome Awareness Month!
Meet three year-old Connor! Today his mama, Jessica, writes about her strong emotions when she was told he had Down syndrome and how she reached out for help. You can find Jessica on Instagram at @jessicamucka. And check out Connor’s hat. Jessica says he has to have it when he leaves the house, and he sometimes takes it to bed! Too cute.
If you’ve been following along with our Down Syndrome Awareness Posts this month, you have likely noticed the trend of parents expressing how difficult it was to first learn their child had Down syndrome. This is one thing I point out to any new parent. Whatever emotions you feel after any unexpected diagnosis is okay. The most important thing to do at that time is to surround yourself with people who love you and to find good resources. Take the time you need before fully embracing the diagnosis. Be healthy and give yourself grace. The sadness or frustration will melt away and a whole lot of love and hope will remain.
My husband and I found out that Connor had Down syndrome 3 days after he was born. Each pediatrician that came to see him had a different opinion on whether or not he showed signs. Finally a blood test was ordered and it was confirmed. Connor had Down syndrome. Being only 29 years old when I was pregnant with him, I refused any testing. My husband and I knew that we would love our child no matter what. So I wish that in the moment I heard the news I smiled and said something wonderfully poetic like, “That doesn’t change a thing, we committed to love him and we’re thrilled he is who he is.” What actually happened was a sea of tears that didn’t end for weeks. I couldn’t stop crying for days on end. I felt every emotion there is but the worst, most prominent feeling was that of guilt. The guilt I felt for crying so hard and being so upset. I loved Connor so why was I so upset about this diagnosis. He was a beautiful baby boy but I couldn’t make the tears stop and the guilt just intensified. I soon started to just feel numb. As we walked into the Cardiologists office when he was 6 days old to have an echocardiogram, I wasn’t present. I was sleep deprived and depressed. Thankfully Connor was cleared of any hear defects and surgery wasn’t necessary. When my husband and I got back into the car to go home, I broke down. I again felt guilty that I hadn’t really been aware of what potentially could have come out of the appointment. The numbness was taking over. It was how I was coping. I decided to get help and we reached out to the Massachusetts Down syndrome Council. The MDSC provided support, information and hope.
Fast forward to three years later and the guilt is gone. Sometimes I wish I could go back and not have wasted so many tears, but I think that healing was necessary. I was mourning the son I thought I was having and that allowed me to accept the one that was meant for us. I couldn’t be prouder of Connor. I watched him struggle with therapy and now he’s running circles around me. We have been overjoyed by every milestone, every word he adds to his vocabulary still warrants large celebrations. We clap, jump and embrace in happiness daily. He makes us laugh every day and he loves to dance. Don’t get me wrong not every day is completely magical; after all he is still a toddler! He still gets mad if he gets the wrong cup or doesn’t get his way. But, these are challenges that were would be facing with any kid.
The biggest gift he has given me is the ability to watch life through his eyes. He is so pure and loving. He has overcome more challenges in his three years than many do in a lifetime. We are truly blessed to be given the ability to love and care for him. He has already changed the world around him. I couldn’t be more thankful for him.
Click below to read all the stories from Down Syndrome Awareness Month!
This beautiful girl is two year-old Eloise, or Ellie. Today here mom, Catherine, shares her heart about these last two years with her sweet girl. You can find Catherine and Ellie on Instagram at @myaandellie and on their family blog at adventuresofmyaandellie.wordpress.com.
When did you find out Ellie had Down syndrome?
We had our first ultrasound with Ellie when I was 12 weeks pregnant. At that ultrasound we were told that Ellie had a thick nuchal fold, a marker for Down Syndrome. We had opted out of prenatal testing. The afternoon of our ultrasound my family doctor called me into her office and told me what they had found. She discussed further testing with me. I had never thought about having a child with special needs, but I knew at that time I would never abort this baby, no matter what any test told me. I told this to my doctor and said, “well maybe a test would be nice so I can know for sure.” She looked at me, she is a close family friend, and asked why. Why would it be nice to know? I decided not to get testing and went home to talk with my family about the possibility of a child with special needs. My husband agreed, we would never abort. At the 20 week ultrasound no markers for Down Syndrome were found. Although Ellie was born with a heart defect it was not detected in any ultrasound. We admittedly were a bit relieved and continued the pregnancy thinking we were having a typical child, although there was something in the back of my head that told me this was not the case. When Ellie was born I remember two things from those first few moments, the fact that she didn’t cry when she was born and how loose she felt in my arms. Within minutes our midwife told us she had Down Syndrome and later that day we were told of her heart defect. I am so thankful that we didn’t know for sure during her pregnancy that she had Down Syndrome. I am an anxious person and my nerves would have taken over my need to have a happy pregnancy. Once she was born, and I held her in my arms, there was no doubt I loved her with every breath in my body. Her diagnosis felt insignificant when compared to this love. Seeing Down Syndrome and feeling it was more important to me than the visions of an anxious pregnant mother.
If you could go back to the days and weeks after first hearing her diagnosis, what would you tell yourself?
I wish I could give myself a hug and tell myself that everything is going to be okay. I wish I could say, “Its okay to cry because difference is hard, difference is not what you expected, but difference is not an end to anything.” I wish I could say that Ellie will bring joy you can’t even imagine. That she will teach you the power of a smile. That she will show you how to fight and how to live one day at a time. Difference seemed so hard, and I’m realizing that there is no set blueprint for a life, no set course, no perfect model of what your life is going to be. If I hadn’t been so focused on how I had envisioned my life to be, I think maybe that first day wouldn’t have been so hard, because now, two years later, my life is exactly how I want it to be.
What is one of Ellie’s favorite things to do?
Ellie loves to watch me run after her. She is a very sneaky baby and when she knows she is doing something mischievous, she thinks its the funniest thing in the world. Ellie is not quite ready to climb stairs without my supervision, but she will sneak to the stairs, stand on that first stair and laugh hysterically when she realizes I’m chasing after her.
What is the most wonderful part about knowing Ellie?
She is joy. Don’t get me wrong, Ellie is not always happy, but her happiness is so pure, so perfect, it glows from within her. Everyone who meets her falls in love. People at grocery stores can’t stop smiling at her, she causes strangers from across a room to come talk to us. The other day at physical therapy class, as we were leaving, Ellie approached a stranger and gave her a hug. She loves hugs but I’ve never seen her approach a stranger like that. The woman looked at me, with tears in her eyes, and told me that just made her day. This little girl is joy, in so many ways.
What is something you want everyone to know about Ellie?
Ellie is so much more than words on a hospital chart. She is so much more than a diagnosis. I remember when we first found out she had Down Syndrome things seemed so different. The life I had envisioned for my family and my children screamed different. But the thing I have realized is that difference is not a hindrance in our life. Ellie truly is more alike than different. She is a typical kid in so many ways. She is kind, loving, sneaky, she gets frustrated, she gets angry, and she laughs. Her laugh is the most amazing sound. She is doing everything I expected my child to do. Her relationship with her sister is exactly what I envisioned before I knew she had Down Syndrome, when I was dreaming of my kids before having them. Ellie is also the light of our home. When someone is sad, she has empathy well beyond her years and knows when someone needs love. When my husband comes home from work Ellie runs screaming to the door to give him a hug. In the morning, when Ellie wakes up, she starts laughing. I have never heard her cry when she wakes in the morning. She starts every day laughing.
Click below to read all the stories from Down Syndrome Awareness Month!
This month, I’m participating in the Write 31 Days challenge with Crystal Stine. DaySpring.com is celebrating all of the amazing Write 31 Days readers who are supporting nearly 2,000 writers this October! To enter to win a $500 DaySpring shopping spree, just click on this link & follow the giveaway widget instructions. Good luck! And thank you for reading along during Down Syndrome Awareness Month!
I had been following Nikki on Instagram for quite a while when I started seeing the most adorable photos of her little boy. He was flying! Nikki and her husband, Alan, have created an amazing series of photos called Wil Can Fly. The photos have become quite a hit online and are helping raise awareness of the incredible potential of those with Down syndrome. You can follow Wil and his family on Instagram at @nikkizl and @thatdadblog, and at ThatDadBlog.com.Also, today is Wil’s 2nd birthday! Happy birthday!!
We didn’t know that our sweet baby boy had Down Syndrome until the day he was born. After he was born my husband Alan heard the nurse and my OB talking about some “unique features” that they were noticing on Wil. My husband knew immediately but I had no idea until the nurse brought my newborn baby over and placed him on my chest. She said that she wanted to talk to us about some features that they had noticed on Wil. She said that they thought that he might have Down Syndrome. As soon as she said this I looked into my sweet baby’s eyes and knew without a doubt that she was right. I knew she was right, and although I have never been around anyone with Down Syndrome, and knew absolutely nothing about it, I was okay. I knew at that specific moment that Wil was blessed with a special spirit in a special body and that even if it wasn’t always easy, his life would be such a huge blessing to me and our family. I felt so honored to be his mom.
I had no idea what an unexpected blessing having a child with Down Syndrome would be. We have met so many people and made friends with people that we never would have met otherwise. The Down Syndrome community is amazing. My heart has grown so much.
You must click over to the NBC News website to see the sweet video that aired last spring of Wil’s journey to flight. Then, you can find even more on Facebook at That Dad Blog and at the Wil Can Fly shop.
Click below to read all the stories from Down Syndrome Awareness Month!
This is three-year-old Tanner, and today’s post comes from his mama, Erin. Tanner is the third of three very handsome boys. You can follow their story on Instagram at @sappho42.
How/when did you find our your loved one had Down syndrome?
I had to go through fertility treatments to get pregnant with my first 2 sons. It took a lot of time, money and effort. So after our 2 older sons were born. A short time later, I had not been feeling great, and visited the doctor. Low, and behold when I visited the doctor, he made me take a pregnancy test before writing a prescription. I laughed because getting pregnant on my own was impossible. Well, I was pregnant. I had a phenomenal pregnancy, and I thought I had take all of the tests. Obviously, I did not. I chalk it up to the fact that I had to do every test under the sun with the fertility treatments.
Tanner decided to arrive 2 1/2 weeks early. When he was born, the doctor was concerned that he was too quiet and that he was floppy. I just sat there praying that he would not do NICU time. My second son was in the NICU. (I speak of it like prison!!! But it is an amazing place for our babies if they need extra help.) We still had no clue that he had Down syndrome. Around 2 in the morning the nurse took him for his first bath, and never came back. We fell asleep, only to wake up to an empty room. The nurse then ushered us into the NICU and explained that he had low oxygen saturation levels….and it was probably due to his having Down syndrome. Well, my husband nearly fainted and I just thought, Whatever, just get us out of the NICU. They tested him and sure enough, our incredibly amazing son has Trisomy 21.
What were some of the emotions you had when you got the news?
Shock. We cried a lot, but not because we were sad. I think we cried because we really didn’t know what else to do. We worried. But truly, we worried about the things that all parents worry about with any child…will he be ok? will he find love? will he be smart? etc….Then, we got really excited because Tanner was going to teach us things that we didn’t know about. My husband said, he’s going to be our fountain of youth, because we both believe that learning keeps us alive, and young!
The most wonderful part of knowing my loved one is….
We say that we are in a bubble because of Tanner. A really cool bubble that slows life down a bit more than the outside world. A bubble that teaches us that the outside world’s timeline doesn’t matter to us, but what does matter is the reaching of goals. And what’s really great about our bubble is that our family and friends get to be a part of it. So instead of stressing about if Tanner is talking in full sentences yet (he’s not), our family gets to celebrate with us that he is picking up words and signs so fast lately. Before having Tanner, I did not know that this alternate universe existed, and I am sad about that. Tanner has really opened our eyes to the joy and wonder that this world is. I love that he is teaching us way more than we will ever teach him.
Click below to read all the stories from Down Syndrome Awareness Month!
